An estimated 65,000 children in the Middle East and North Africa region have insulin-dependent type 1 diabetes. Support groups offer help in coping with this challenging condition, discovers Suchitra Bajpai Chaudhary

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Seven-year-old Paul* loves playing doctor. On a Friday morning he and his friend Dev are out playing in the garden of his villa in Springs, Dubai. Paul holds a toy stethoscope close to his teddy bear’s chest. A few seconds later, he presses a little strip of paper on Teddy’s paw, and pretends to take a reading. “The numbers don’t look good,’’ he says earnestly. After pretending to calculate some figures, he says: “Looks like Teddy might need an injection.’’ Paul then fishes out a toy syringe and injects Teddy in his stomach. “You’ll be fine now,’’ he says, propping Teddy on a little chair and running off to play on the swings.

A few metres away, Myrna*, Paul’s mother, who saw the scene, smiles. Her little boy was diagnosed with type 1 diabetes three years ago and is now play-acting something he does at least four times a day – checking his blood-sugar levels and then injecting himself with the right dose of insulin. Paul is not alone. Areej, a six-year-old student from Sharjah, was diagnosed with type 1 at the age of two. His family has no history of the condition, and it was only detected during a routine check-up at the paediatric clinic. He now checks his blood-sugar levels regularly with the help of an adult and is learning to calculate and inject himself with the required dosage of insulin.

“My mother, Safa, ensures I follow a healthy lifestyle,’’ he says, explaining how he’s had to give up his favourite pizzas and burgers to help control his condition.

According to the International Diabetes Federation (IDF) there are an estimated 65,000 children with type 1 diabetes (see box overleaf) in the Middle East and North Africa region.

According to Dubai-based Dr Khawla Belhoul, who started an online support group www.sweetkidzdiabetes.com, “Type 1 diabetes is very different from type 2 diabetes. The former affects young children who become completely insulin-dependent and require multiple and daily insulin injections to survive. When a child has type 1 diabetes, it means that the immune system has made a mistake and destroyed the insulin-producing cells in the child’s pancreas. That is why type 1 diabetes is considered an autoimmune disorder. Living with type 1 diabetes is hard and taking care of diabetics is very demanding. Frequently, the outside world does not realise or understand the special needs of children with type 1 diabetes.

“Early detection of type 1 diabetes helps save lives and prevents the child from going through severe early life-threatening acute complications. Symptoms like increased urination, thirst, unusual hunger, weight loss, tiredness and weakness are alarming in a child and if these symptoms are detected the parent needs to contact a paediatrician immediately.”

In fact, type 1 diabetes is one of the most common life-threatening disorders in childhood around the globe, with around 440,000 children under the age of 15 affected, according to the IDF’s resource, Diabetes Atlas. What is also worrying is that the incidence of type 1 diabetes among children is increasing at an estimated average of 3 per cent per year across the globe. In other words, around 70,000 children worldwide are expected to develop type 1 diabetes annually.
The UAE has the second highest prevalence of diabetes in the world with close to one in five people suffering from the condition and another 18 per cent at high risk of developing it, according to a report on the Dubai Health Authority’s website.

Finding support

It is important to recognise the symptoms of the condition early so it can be tackled effectively. And once diagnosed, it is also important that the patient take care to ensure that the condition does not worsen. That’s why there are several support groups which offer help and give advice to those suffering from diabetes to ease the pain of living with the problem. One such group is I am Number One, (www.iamnumberone.org) started by two friends, Evelyn Matafonov and Gilly Geisler, in Dubai towards the end of last year.

Evelyn’s son Michael, 16, was diagnosed with the type 1 diabetes seven years ago while her daughter Ksenia, 19, was diagnosed with the same condition a year later. Gilly’s son, Alexander, 13, was diagnosed at the age of seven. “There wasn’t really any support group for families with children who have type 1 diabetes,’’ she says. “At home you would normally have support from family members too, which being expatriates generally isn’t the case.’’ Gilly, 50, and Evelyn, 48, started by sending emails to friends asking them to forward these to whoever they felt needed help and “the response was tremendous,’’ says Gilly.

Among the first who signed up to the group was Sarah Gandz, mother of Keenan, eight, who was diagnosed with type 1 at the age of two. He’s had insulin injections as often as is required ever since. “He understands that he is different from other children at school. But at our regular meetings, when Keenan meets other children with diabetes he feels a sense of belonging,” says Sarah. “The group offers a wonderful opportunity for toddlers to meet older children with diabetes and learn from them how to manage the condition. It is a great morale booster for all of us.

“All parents want their children to live as normal a life as other kids and they make it a point to attend all meetings where we discuss issues and situations that arise at school or at home in relation to their condition.’’

Gilly mentions a recent incident where a mother had to send her daughter on a school outing to a water park. “The mother wanted to know what precautions had to be taken,”

she says. Another mother had gone through the same thing and could give her advice – which was to disconnect the pump for the day and go back to regular injections because pumps cannot work under water and are likely to malfunction.

Tips for sufferers

Sharing tips helps families be better prepared for any occasion – including Evelyn and Gilly’s own experiences. Gilly’s realised her son’s blood sugar levels vary depending on the activity he’s been doing. “His blood sugars drop when he returns home after a game of ice hockey,” she explains. “Being in the cold environment, his body temperature falls and the blood-sugar level decreases as well. But if he has gone out fishing, for instance, his body temperature goes up due to the heat and so does the blood-sugar level. “So, the insulin units he needs to inject depend on the type of work or play he is involved in.’’

While this is what Alexander experiences it may not be the case for others, but discussing it at the support group helps, especially for families who have just moved to the UAE.

Their children’s condition may change as they acclimatise to the UAE. According to a Mayo Clinic (a not-for-profit medical research group known for innovative and effective treatments) report, while heat doesn’t have a direct effect on blood glucose, it can lead to changes in a person’s daily routine which, in turn, can affect blood glucose levels.

A blog maintained by Mayo Clinic’s experts on diabetes offers several tips for managing diabetes in warm temperatures including avoiding sunburn as it can stress the body and raise blood glucose; drinking plenty of water to avoid dehydration; exercising in the early or later hours of the day when the temperatures are cooler; and checking blood-sugar levels frequently, since they may fluctuate.

The experts also warn diabetics not to go barefoot on hot surfaces (as the feet of diabetics are extremely sensitive), avoid caffeinated drinks that can be dehydrating and watch out for signs of possible heat exhaustion such as dizziness, fainting and excessive sweating.

Of course I am Number One is not the only type 1 diabetes support group in the UAE. Dr Belhoul started hers, Sweetkidz, in 2003 after she had a child with type 1 diabetes. It’s a hugely interactive online support group which she believes it is essential to create a greater awareness amongst society and sensitise people to this condition.

“We in the Sweetkidz group dream of a society where our little ones with diabetes can blend effortlessly in their interactions with the outside community forces like school, daycare, relatives and friends… and can manage their healthcare needs as beautifully as they live their lives,’’ she says.

Raising funds and awareness

The good news is that type 1 diabetes can be effectively managed with greater education and community support. Dubai-based Landmark Group, through its on-going initiatives such as ‘Beat Diabetes, Eat Healthy’ and ‘Beat Diabetes, Get Active’ campaigns, is actively seeking to raise awareness about the condition.

Says Bhuvana Acharya, head of Corporate Communications and CSR, Landmark Group, “We encourage people to monitor their blood-glucose levels regularly to ensure early detection and better management.’’

This year, the Landmark Group helped raise Dh500,000 through various charity programmes in its stores across the region in support of the IDF’s ‘Life for a Child’ programme, which helps diabetes centres in developing countries provide essential clinical care, medical supplies and education for children with diabetes.

Beat Diabetes is also working alongside diabetes support groups such as I am Number One. Every month, parents convene at ‘Beat Diabetes Community Mornings’ at Balance Café in Oasis Centre, Dubai to interact with an expert who sheds light on different aspects of diabetes management for children.

Landmark Group is also planning to join forces with the Sweetkidz support group, which conducts events that empower children with diabetes to overcome their fears about the condition.

The group is now busily going over the last-minute preparations for the Beat Diabetes Walkathon on November 23 – something which Paul and Areej are keen to take part in.

“Oh yes, I’m going to be there,’’ says Paul. “I’ll take Teddy with me, and make sure he gets all his injections.”

And with that he grabs the fluffy toy and runs off to play.

What is diabetes?

Type 1 diabetes is a condition where the pancreas no longer produces insulin, causing the blood glucose levels to rise significantly. It is essential to understand how to monitor blood glucose (by pricking the finger and dropping a pinhead sample of blood on a strip which is then placed in a glucometer, which shows the glucose reading) and administer the correct dosage of insulin required. Unlike people with type 1 diabetes, people with type 2 diabetes produce insulin; however, either their pancreas does not produce enough insulin or the body cannot use the insulin adequately.

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